Home (for now) and happy Kidneversary!

[Phyllis Ann Talbot]

Hi all - let me start by saying this isn't exactly how I imagined writing this update - I'd been planning my big Kidneversary update in my mind for the last couple of weeks and as usual - Hyde had other plans!

On the short term front - yes we are home. The feeling for now is that Hyde's mouth sores were due to the medicine change, and he also got hit around the same time with some type of nasty virus causing the high fever and diarrhea. He's been fever free for the last couple of days but the other problem is just about the same as it's ever been. The dr's THINK that the virus kicked this problem off, and another of his medications, CellSept, which is tough on the GI system, just made it difficult for everything to get back in balance, so as of today they have switched this to a different medication, Imuran, which is easier on the digestive tract. Hopefully this will help him improve over the next few days. Not trying to be negative when I say we are home for now, just realistic, a big fear with transplant kids is dehydration, and after being taken off the IV fluids yesterday, Hyde lost a good bit of weight in the last 24 hrs, meaning he's not taking in enough fluid to keep up with what's going out (so to speak ;-)). So we are going to hope that this improves with 'home' food and drinks and we'll weigh him like the old days to watch this and see what happens.

The other short term thing is that he is scheduled for his 1 year biopsy next Thursday, so hopefully you won't hear from me again until next week after a successful biopsy - but just remember him if you think of it next Thursday.

Now - on to the much happier reason for the update today - Hyde and Warren's 1 year Kidneversary!!!! It has been a simply amazing year, and I think we had realized how very UNnormal Hyde's life was pre-transplant. I can't say enough about how great the last year has been, and mostly just due to the 'normalness' of everything.

This brings me to Warren, how can Bill and I thank you for literally giving our baby his life back? For letting him eat popsicles with all the kids down the street (not the measly 1/2 of a popsicle he was allowed before)? For allowing him to have sleepovers, go to the beach and get IN the water, for having a POOL birthday party and eat all the ice cream he wanted at it? For not being hooked up to a machine for 10 hours every night of his life, being afraid of infections constantly, for not being weighed and blood pressure checked every morning and night, for not being on more blood pressure medicine than his own grandfather, for and for and for - you get the picture, we could literally go on all day. All we can really say is THANK YOU, from Bill and I from our deepest most heartfelt place. And the best gift? God willing, Hyde will never even REMEMBER how incredible the gift was, he won't remember not being allowed to drink water when he was thirsty and all the machines, and ports, and dressing changes every night. And that's all that we all want - for Hyde to not even remember, but Warren, please know that Bill and I will never ever forget as long as we live. Thanks for our boy........

Bill and Phyllis Talbot

[Grace]

Happy anniversary! and happy happy "normal" life! I hope Hyde recovers rapidly and has a good biopsy tomorrow with as few complications/hassle as possible!

[Cheryl Biermann]

Thanks for all the detail!  Looking forward to our update in 7 months!  Love you guys!  Here's to popcicles, ice cream and lots of salty snacks, oh yes, and a 16 oz. toast of kool-aid, cheers and many more anniversarys to come, Hyde!

[Melissa Hearn]

SO Happy you are home.  What a crappy week, and what a wonderful one year celebration.  Looking forward to many more Kidneversaries to come!!!!

[Linda Burke]

Tearing up....and so grateful for the joyful year you've enjoyed - with many more to come.  Donors for our aHUS patients are incredibly special people!